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WYATT RECH

WYATT AT THE SIGNING OF THE CONQUER CHILDHOOD CANCER ACT ON JULY 29TH, 2008 IN THE OVAL OFFICE AT THE WHITE HOUSE








WYATT WAS BORN WITH A CONGENITAL GROWTH RELATED DISORDER CALLED BECKWITH-WIEDEMANN SYNDROME. BECKWITH -WIEDEMANN SYNDROME AFFECTS 1 IN 15,000 BIRTHS. THIS SYNDROME PUT WYATT AT RISK FOR CHILDHOOD CANCERS. NAMELY WILMS TUMOR AND HEPATOBLASTOMA. MOST CHILDREN WITH BWS DO NOT DEVELOP CANCER, APPROXIMATELY 1 IN 10 DO. WYATT HAS BEEN SCREENED SINCE HE WAS 3 MONTHS OLD FOR THESE CANCERS. THE SCREENINGS CONSISTED OF AN ULTRASOUND EVERY 3 MONTHS TO LOOK FOR ABDOMINAL MASSES AND AN AFP TEST EVERY 6 WEEKS TO CHECK FOR LIVER CANCER. ON TUESDAY, FEB. 3, 2004 DURING A REGULAR 3 MONTH ULTRASOUND SCREENING A MASS WAS FOUND ON WYATT'S RIGHT KIDNEY. IT WAS CONFIRMED BY CT LATER THAT DAY. WYATT UNDERWENT SURGERY ON TUESDAY FEB. 10TH TO HAVE HIS TONSILS, AND ADNOIDS OUT, HIS EAR TUBES REINSERTED AND A BRONCHIAL SCOPE DONE TO CHECK HIS AIRWAY. THIS SURGERY WAS MOVED UP A WEEK TO COINCIDE WITH A PARTIAL NEPHRECTOMY TO REMOVE THE MASS ON WYATTS RIGHT KIDNEY. DURING SURGERY 2 MORE SMALLER MASSES WERE FOUND ON HIS KIDNEYS. ANOTHER ON THE RIGHT AND ONE ON THE LEFT. WYATT WAS DIAGNOSED WITH WILMS TUMOR ON TUESDAY, FEB. 17TH AND HAD SURGERY ON WEDNESDAY, FEB 18TH TO HAVE A PORT-A-CATH PUT IN HIS CHEST TO ADMINISTER CHEMOTHERAPY AND ACCESS HIM.

AFTER 20 WEEKS OF CHEMOTHERAPY WYATT'S MRI, CT, AND ULTRASOUND WERE CLEAR ON JULY 15TH, 2004 AND WE WILL CONTINUE THE ORGINAL SCREENINGS FOR CANCER THAT INCLUDE AN ULTRASOUND EVERY 3 MONTHS AND AN AFP TEST DONE EVERY 6 WEEKS ALONG WITH HIS CANCER SCREENING PROTOCOL.

PLEASE SIGN WYATT'S GUEST BOOK! YOU WILL SEE ENTRIES FROM ALL OVER THE WORLD. MANY OF WHOM BELONG TO OUR BECKWITH WIEDEMANN SUPPORT GROUP.

THANK YOU FOR ALL OF YOUR POSITIVE WISHES. WE LOOK FORWARD TO ALL OF THE MESSAGES FROM EVERYONE. PEOPLE HAVE BEEN SO GENEROUS AND WE ARE OVERWHELMED BY THEIR THOUGHTFULNESS.LOVE JIM, KRIS, WYATT AND FAMILY

Journal

Monday, April 20, 2009 10:16 AM CDT

Good morning.

Wyatt is doing well. He loves to be outside, and is now sporting a little dimpled tan face.

We are continuing on the same course for scans, his kidneys both showed continued growth. They are at the upper limits of normal.

We have had no other issues with the partial bowel obstruction. he at times will complain about his stomach hurting, he did this morning. It is hard to know what is causing the issue, but we are pretty sure it has to do with adhesions from his partial nephrectomies of both kidneys.

We also have to deal with Wyatt's hemihypertrophy, and his Beckwith-Wiedemann.

This morning I have been on the phone making appointments with Gillette Childrens for his appointments with the leg length specialist, and his physiatrist. They will be measuring him and checking his leg length difference. A Scanogram (type of X-ray that has a ruler integrated into the picture) is taken in order to confirm the specific location and amount of the discrepancy (e.g., thigh bone vs. lower leg bone).

The scanogram results along with the chronologic and skeletal ages are plotted on a special LLD graph in order to follow the progression and plan the treatment timing.

One method, epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up." This method could shorten Wyatt's potential height by up to 2 inches.

Another of Gillette's techniques include conventional orthopaedic surgery and the Ilizarov method, a minimally invasive limb-lengthening procedure. The Ilizarov method relies on the body’s ability to heal itself through “distraction osteogenesis.” Surgeons make a small incision in the leg and fracture the bone. An external fixator (a system of pins, rods and clamps) keeps the bone segments in place and gradually increases the distance between the two segments. As the segments separate, the body grows new bone tissue.

Doing nothing can lead to scoliosis. Scoliosis of the spine can occur in response to the leg length discrepancy. The spine naturally responds by developing a curve in order to keep the head center approximately over the center of the body.

Long term back problems in addition to scoliosis are also possible.

We could also be having a gait and motion analysis. They use state-of-the-art computer technology to evaluate and develop effective treatments for movement problems. They would be checking to see if Wyatt's leg length discrepancy is affecting the way he moves, or if it has the potential for problems in the future.

Dr. Dahl, and Dr. Taniguchi are top notch, as is Gillette Childrens. We are very lucky to have them in the Twin Cities.

He is looking forward to being in Emma and Steve's wedding in June. He loves to wear "rockstar" clothes.

He misses Justin. He misses him horribly. Hopefully Justin will have some time off soon, or maybe we will have to make a trip to Winona.

Ali is playing softball, she is playing varsity, and hit a triple on her first at bat as a varsity player. Her defense the first game was not stellar. She was incredibly nervous, and is playing a new position at 2nd base, but has since settled in. They are 3-0 at the top of their conference.It is s a great accomplishment for them as a team.

Carter is looking forward to baseball.

Enjoy the beautiful weather!

Kris

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Hospital Information:

Patient Room: outpatient

Children's Hospitals and Clinics (Mpls and St. Paul)

St. Paul
651-220-6000

Links:

http://smilequilts.com/wyatt.html   A virtual quilt made especially for Wyatt
http://www.geocities.com/beckwith_wiedemann   A website that will give you information about the congenitial growth related disorder that Wyatt was diagnosed with.
http://www.beckwith-wiedemannsyndrome.org/tp42/page.asp?ID=48781   Video clip from the Beckwith-Wiedemann DVD that we were filmed for


 
 

E-mail Author: kmrech@hotmail.com

 
 

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